My EF Story

By Lauren, Eosinophilic fasciitis, United States, July 4, 2018

I always thought I was pretty healthy. I ate well for the most part, felt great, and doctor’s appointments always well. I never would have imagined that I would be diagnosed with a rare disease that would affect my body forever. My now husband and I had just returned from our Hawaiian honeymoon when my world was flipped upside down.

I started noticing lumps on my abdomen that didn’t feel normal. I went in for a routine physical, and the doctor was just as clueless as I was as to what they were from. Shortly after that, my skin started tightening. My stomach felt like the skin was being stretched, and that spread to my lower body, along with the lumps. I originally thought that I was suddenly developing an intense case of cellulite, but it was hard to the touch. Before I knew it, the lumps and tightness had taken over my abdomen, lower body, and arms. My elbows and knees started aching. I felt tight all over.

I saw doctor after doctor. I was pricked, poked, pinched. I’ve never seen so many puzzled faces. Five doctors later, I was finally introduced to a dermatologist who wanted to perform a punch biopsy on me as soon as she saw my skin. Before I could even finish explaining my symptoms to her, I was laying on my side on a table getting lidocaine injected into my hip area. As I laid there, nervous and confused, I knew that I was dealing with something that would lead to a long journey ahead.

After the punch came back, the lab results suggested Deep Morphea. I took these results with me to a Rheumatologist who took one look at my chart and told me that she thought this was probably Systemic Scleroderma. I had done my share of Googling and those were the two words I did not want to hear. In fact, as soon as they came out of her mouth, I had to stop her and ask that she repeat herself. Was I hearing her right? Did I have Systemic Scleroderma? I’m 27 years old. Is my quality of life really about to take a nosedive? Is this disease going to eventually kill me? I had never really thought about death until then. I had been relatively calm throughout this process up until this appointment. I got home and completely lost it. Tears, sobbing, all of it. I couldn’t pull myself together the entire night. I’d have to wait 2 weeks for the blood results to come back with my fate, but of course my mind was already thinking of the worst case scenario.

Those two weeks were grueling. I was a rollercoaster of emotions and thoughts. Life suddenly felt so much more precious. I was a newlywed. I was ready to start a family. I had so much more of life to live. I wasn’t ready for that to be taken away from me.

When the results came back, I felt the biggest relief when they showed no signs of Systemic Scleroderma. With process of elimination, I was diagnosed with Eosinophilic Fasciitis, or what I like to call, EF. EF is so rare, that there’s really no straight course of treatment, or really a ton of research on it. I can’t even tell you why or how I contracted it. Really the only way we would be sure I had EF is if I responded to a corticosteroid and an immunosuppressant.

So here I am, 7 months later, taking Methotrexate and Prednisone hoping for results. My skin has softened a bit. I don’t feel as tight. But I look exactly the same as before I started treatment. Sometimes that is a hard pill to swallow. Will I look like this forever? Will I forever be ashamed to show my legs and arms because of my lumps and bumps? I have changed physically from this disease, and on top of that, the medication has given me a case of steroid acne as well as the dreaded “moon face”.

This journey has made me appreciate my body more than I could have ever fathomed. I have faith that someday I will look like my old self. If I ever felt self conscious about my body before, I take it all back. I will forever appreciate my body and my shape more than ever. I pray that this will be a distant memory soon enough, and my husband and I will be able to start building our family. Until then, I’m on this roller coaster ride and all I can do is have faith that I will have remission soon. Faith and positivity is all I have, and they’ve helped me cope tremendously.

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